If No One Wins the “What If” Game, Why Do I Insist on Being the Team Captain?

How great it would be if I could say things that wouldn’t hurt?  It would be even better if I could say things that wouldn’t offend.  Things would be better yet if I could speak and write without being misunderstood.  Imagine if people could truly know how much I love them–need them–depend on them.  What if my heart never had to bleed, never had to hurt, and it would never be misunderstood?

As a parent, we make the best decisions we can for our children.  As a parent of a child going through chemotherapy—this is never enough.  How I would have loved to have had treatment plans that included numerous options and not equally unappealing choices of a) no treatment, which would ultimately lead to death or b) toxic treatment which may prolong life but may also cause death.  What if the phrase “if the cancer does not kill you the chemo will?” never existed?  What if parenting meant never having to feel that you are never doing enough to help cure your child?  What if treatment options all had a silver-lining (rainbows and unicorns) and were devoid of the “risk of death”?  Is it feasible to hope that all treatment options could be covered by insurance?  Imagine protocol options that are not 30+ years old.  What if you never had to ponder if “money” is a dark-lurking shadow which makes you question the government and big pharma’s involvement in finding a cure? What  if research was never restricted to an ailment because it was considered “rare” and did not effect enough people?  What if the media (all media) was actually sensitive to how their marketing would be perceived by families fighting the hardest of battles?  Imagine if you never had to read a medical journal  which states the choice of treatment you have chosen for your child is comparative to “swatting a fruit fly with a baseball bat.”  It would be great if parents never had to hear, “we need to act immediately.  This is life-altering for your son.”

When is society going to learn that though we all may have opinions, it’s not always necessary to express them?   When did it become okay to judge one another (whether it be directly or passive-aggressively) when we are acting upon the best interest of our children?  Are we suppose to cast the first stone?  Or are we suppose to walk a mile in one’s shoes?  Trust me…you can have my shoes.  You can have my closet for that matter.

I try to remain neutral.  Is this because I have no spine?  Is it because I have no conviction of belief?  No…it’s because I’m a firm believer in that it hurts no ones  feelings by holding your tongue (FYI, I’m preaching to myself, here).  This culture of “I’m not a b!tch, I just say how things are…” has gone completely too far.  Am I being a sensitive mom with a chip on my shoulder?  Hell, yeah, I am.  My kid is going through chemo.  Is that a good excuse?  Absolutely not.  Am I embarrassed that my mind and heart are in constant battle of how I think and process things?  Absolutely.  Should I crawl under a rock when I hurt those around me who love the most?  Yes, but I haven’t found a big enough rock.  Where did happy, funny, easy-going Amanda go?  She got misplaced somewhere between Birmingham and Boston so if you see her, please tell her she is missed and there are some people in New England that would love to meet her.

What if my son needed only bandaids instead of surgery and scans?  My son has scars from his neck being sliced open.  Scars from his bone marrow biopsy.  More scars from his skin biopsy.  Oh, then there are the scars from his broviac-central line implantation AND removal, yeah, he has scars from those, too.  Not to mention the newest scars from the implantation of his portacath.  And then I wrestle with thoughts of, “but Mac still doesn’t have it as bad as so and so …”  Have you ever heard your doctor say, “brain tumor” regarding your child?  No?  Then you don’t have a dog in this fight.  Well, you do, actually.  Because like me, you probably have a child.  Or know someone who has a child.  You may even believe that children are our future–everyone’s future.  If you have any heart, you want the best treatment options to be available to everyone.  Everyone with no restrictions.  No restrictions of insurance coverage.  No restrictions of FDA approvals.  No restrictions of having a “cure,” no matter how many people are diagnosed.

Imagine if at night, when you have “alone” time, you actually got to do something you enjoyed.  Trust me, I love to read but somehow my recreational reading has bred a three-ring binder for treatment options, another binder for cancer and cancer-like diseases, another for medications, and yet another binder for medical journals and case studies.   A cure is not something I can buy much less get my hands on, whether it be legal or otherwise; so yes, for the first time in six months, I may actually be ballsy enough to ask, “why?  Why is there no cure?  Why, for the love of God can I not just shut my mind off and enjoy what little time I have with my husband?”  I am saying as a parent struggling for each breath of every day not only for myself but for that of my child, I detest the flippantness that goes in regards to the “C” word and it’s cure (or lack thereof).  I H-A-T-E the lack of funding or misappropriated use of funding.  And friends, for the record:  I despite the word “hate.”  Hate is a very strong word.

So for now, I am left with thoughts of “imagine…what if…if only…how great would it be…”  Breath.  We have made it through another day.  Another day is another day won.  A day lost is a day closer to seeing our eternal reward. #macsafighter and so are his friends!

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4 thoughts on “If No One Wins the “What If” Game, Why Do I Insist on Being the Team Captain?

  1. Oh, Amanda, my heart goes out to you and your family. Unfortunately I have no special words to comfort you. I pray that God will pick you up in His arms and hold you for awhile, stroking your hair and telling you how much He loves you. Just like you do Mac, I’m sure–and Bly. You are stronger than you think, you have proven that over and over again. I cannot imagine being in your shoes, and honestly, I pray that my children are not ever in your shoes either. Know that many people love you, are praying for you and and rooting with all of their might for Team Howard to win this battle.

    • Phyllis, sadly, there are no perfect words. Knowing you love us and pray for us is more comforting than you will ever know. Sending you lots of love ❤ ❤ ❤

  2. Amanda,
    Girl, you are in the battle of your life that most of us will never experience. Actually it is the battle for Mac’s life ( your precious baby), so that would have to be worse than fighting for your own life! Precious momma- my heart aches for you and how all of us mommas wish that could help even a bit. I know the Almighty God that created Mac knows ever detail of your heart and Mac’s tiny life, none of this takes Him by surprise. He is in control and loves you all so much. Trust Him, cry out to Him, believe He really is in control but tell Him all of your fears. There is no human way we can understand this and it is absolutely ok for you to ask why!!!!
    I pray for Him to give you the peace that passes all understanding and that He will send people to comfort you. Try to be ” wife” as much as possible- he is hurting too but you need each-other so much.
    Praying for you all here in Bama!
    Kathy Medley

    • Kathy, thank you so much. I’m declaring you my very own personal cheerleader–I hope you don’t mind! Thank you for your words of encouragement and your prayers. Alabama will forever hold a special place in my heart. Despite Mac’s diagnosis, our year there was one of the best our young family has experienced due to the great people people that came into our lives.

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